For your reading pleasure, and an update/reminder about Charlotte’s little peculiarity (her eating issues), here is the text of my email to the Wisconsin feeding team:
So, Charlotte is rather incredible these days. For the past week, she’s been taking 70-90% of all Pediasure offered by mouth. She’s back on solid food “strike”–she lets us touch her lips with the puree and takes a bite or two every day. She likes to nibble things she can hold or bite herself, but doesn’t eat anything appreciable. Purdue popcorn chicken and all Costco samples are her favorites. Seriously, she’ll eat more solid food while sitting in a cart at Costco than at the table. Yesterday she ate about 2 teaspoons of 7-layer dip, some off my finger (!). On Sunday she chomped on a wonton-wrapped fried shrimp in sweet-hot sauce.
She thinks food is fun–she likes to put it on top of her head, in her ears, on her nose. She very much likes to feed me Goldfish crackers, then open my mouth to see if they are still there, then put another. She’ll drink the Pediasure to get to the Cheerio or cracker she’s dropped in. She puts food in her mouth and takes it out if the bite is too big or if she changes her mind. She mostly smiles during meals. She always wants what I’m eating, even if it’s a grocery store sample (today it was a bite of steak at Whole Foods) or a turkey and mustard sandwich (seriously, she loved it). She drinks a lot of water when she’s playing hard. And she wants my coffee (I don’t give it to her).
Here’s the odd stuff:
8/2 thru 8/12: She took only 20-50 mls. of Pediasure by mouth at breakfast. We’d complement the rest by tube. Then she’d vomit horrifically, ending with what I call the reflux “death rattle” cough/gag. She was recovering from an ear infection and was on Amoxycillin at the time. We decided to serve Mylanta with breakfast for a week and moved her regular meds to later in the morning. We did this for a week. So…
8/13 thru 8/19: with Mylanta at breakfast, her intake steadily increased in the morning, the vomits went away. She vomited after lunch instead.
At the same time, her nap was switching to once a day.
8/19 thru 8/20: No more Mylanta at breakfast; meds back to regular times. Lunch vomited steadily increased. Nap cemented at 11:30 a.m. for 2-4 hours so…
8/25 thru today: At 10:45/11 a.m. we give her whatever she’ll take orally. We finish the feed after her nap. Over the weekend we were unable to complement to finish because we had to be in the car and pumping her in the car is a recipe for disaster. Yesterday she took 100% of b’fast and lunch/snack by mouth. Lunch vomit solved. But, vomits have moved to after dinner–usually 1.5-2 hours after dinner so s,in bed and her sleep is seriously and painfully disrupted. It’s hard to hook her up for a night feed b/c it takes her a long time to settle down and we’re spooked about another bed vomit.
*I’m going to try giving her Mylanta with dinner for the next week and see if that helps. She doesn’t get p.m. meds until 1 hr. after bedtime, so there’s no med conflict.
Charlotte’s stats as of yesterday: 21 lbs. 14 oz., 31.5 inches, head= 45
She did have shots yesterday so that is a likely cause of last night’s fiasco.
Charlotte’s behavioral psychologist let me know that she’s fowarding the note to a GI for consultation on the vomiting. Midge, her nutritionist, will get back to us in a week or so.
I’ll keep you all posted.